Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result

UMMS Affiliation

Department of Pediatrics; New England Newborn Screening Program

Publication Date


Document Type



Aftercare; *Communication; *Cystic Fibrosis; Decision Making; Genetic Counseling; Health Knowledge, Attitudes, Practice; Humans; Infant, Newborn; Massachusetts; Models, Organizational; Models, Psychological; Neonatal Screening; Parental Consent; Parents; *Patient Acceptance of Health Care; Program Evaluation; Retrospective Studies; Time Factors


Allergy and Immunology | Pediatrics | Respiratory Tract Diseases


OBJECTIVE: To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result.

STUDY DESIGN: All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were "screen positive and diagnosis negative" prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center.

RESULTS: At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32%-90%) with completion of genetic counseling between CF centers.

CONCLUSION: CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.

DOI of Published Version



J Pediatr. 2005 Sep;147(3 Suppl):S98-100. Link to article on publisher's site

Journal/Book/Conference Title

The Journal of pediatrics

Related Resources

Link to Article in PubMed

PubMed ID